A guide for living with hemophilia through different life stages
Starting out: 0-9 years
Talking with others
You've probably learned a lot about hemophilia since your child was diagnosed. Now is a good time to prepare for the next challenge: explaining hemophilia to others who may know little or nothing about the condition. It's important to tell certain people for safety reasons, like a coach, for example. Telling others about your child's condition may actually prove beneficial.
Below are some tips to help you discuss your child's hemophilia with others:
- Reassure others that hemophilia is not a contagious disease. It may seem obvious to you, but stating this fact may put people at ease and help open up conversation
- Advise school staff and/or childcare workers ahead of time that any bleed will need to be treated immediately and that you must be contacted right away. Be aware that you may have to go to the school to give your child an infusion
- Provide written information on your child's hemophilia type, factor deficiency, hemophilia treatment center (HTC), emergency contact, and prescribed treatment
- Explain to school staff that being overprotective is not necessary. Let them know the activities your child may take part in, and if there are special needs, discuss how to handle them discreetly
- If possible, arrange a meeting between school staff and your local HTC
Remember to pack up-to-date medical information such as prescriptions, diagnosis, and the name and phone number of your HTC. Doing this can prove useful at security checkpoints. Make sure you and your family members’ medical alert bracelets are up-to-date. And remember: if your insurance coverage doesn’t apply in the country you are visiting, take out special travel insurance.
Once you have everything lined up, you can focus on what traveling is all about: having fun.
Here is a helpful checklist of things to pack and things you may want to consider for upcoming trips:
- A first-aid kit, including ice pack and elastic bandages
- A health care provider’s note and original prescription for clotting factor replacement product
- Contact information for a local HTC in the area you’ll be visiting. Download our mobile app from iTunes or the Google Play store for a complete listing of HTCs while you are on the go
- Factor product and necessary administration supplies
- Some acetaminophen for pain, as needed. Do not ingest any product containing aspirin as this may cause interference with blood clotting
- Check with local transportation regulators on specific restrictions and regulations for carrying prescription medication and infusion supplies
- Check with the departing airport to make sure you have all the information you need to get through security
- Be sure to store your factor according to the manufacturer’s recommendations
Hemophilia Treatment Centers (HTCs): Care starts here
HTCs provide comprehensive care for people with bleeding disorders. HTCs can provide many services that a primary care practice doesn't provide, including supply and delivery of factor, home infusion education, dental care, home visits by social workers, and insurance counseling.
Here are some things an HTC can provide:
- A physical exam once a year; a checkup of joints, bones, and muscles; and a physical therapy checkup
- Dental visit every 6 months
- Blood tests and X-rays
- Financial and/or emotional counseling with a social worker
- Genetic counseling for potential parents
- Contact with local health care providers and hospitals
LEARN HOW TO REACT
Even though living with hemophilia can be routine, there may be that moment when prompt medical attention is required. In that case, remember to REACT.
Recognize the basic physical signs (such as tingling, a funny feeling, swelling, pain, warmth) and nonverbal cues (such as guarding of a certain body part, crying, and behavior that's abnormal) of a child experiencing a bleed. Look for the obvious signs of internal bleeding such as bruising, swelling, and redness.
Emergency action is sometimes necessary. Remember to have your instructions and contact information on hand and up-to-date.
Act by applying basic first aid for bleeds. This is best done using the R.I.C.E. method: Rest, Ice, Compression, Elevation. If you're not sure of the severity of the bleed, don't wait to get help. Call the child's health care provider or get the child to the emergency room as soon as possible. Dial 911 if the situation is appropriate.
Calm is the order of the day during any emergency situation and the best way to help ensure the child receives the appropriate medical attention to get an emergency bleed under control.
Take control of the situation by acting appropriately. When you're calm and in control, a child will be more apt to listen and stay calm.